Doctors

Our Last Trip to the Dentist – or That Thing I Haven’t Wanted to Talk About

by Tim on October 10, 2011

There’s no nice way to say this. Our last trip to the dentist a couple months ago was traumatizing. I haven’t really wanted to talk much about it. It was that bad.

Let me preface the rest of this by saying that it had nothing to do with the dentist or the staff. Unlike our previous dentists’ office who we thought treated us poorly, we love our current dentists. There simply are some ordeals we and our autistic children have to go through that can’t be made good by anyone. Dental hygiene is hard enough for many of our children. But trips to any doctor’s office scare our J-Man into such a horrible place emotionally that I can’t describe it in words, though I imagine many of you know the kind of terror I speak of here.

If you want, you can go back and see our chronicles of dentistry in these past posts:

I dreaded this most recent visit for even more reasons than usual. Mary was recovering from her surgery and still on restrictions against lifting any weight, so doing anything with the J-Man at the dentist was completely out for her. It would be up to me, the dentist, and the staff.

In addition, they needed to pull one of his baby teeth. It was pretty loose already, but his permanent teeth were already completely in behind it, and all those teeth in one place doing different things had been bothering him for a couple of weeks. It needed to go ahead and come out. He’s already super-super-sensitive to anything even the slightest bit unusual with his mouth, and he had been even more reluctant to let us anywhere near his mouth during all this. Clearly all this added up to a formula for impending doom at the dentist.

Thrown into the mix was the obvious fact that he was several months older, bigger, and stronger than the previous visit where we were barely able to hold him in the chair. I’ve been working out consistently for well over a year now not only for my own health but for times like this when strength is essential. But there are limits to how effective this will be. There comes a point where the amount of strength we would have to exert to hold him would be impossible to apply without injuring him. I think we’re there now.

In past visits, we’ve treaded the line between surviving the dentist visit and a cataclysm. As you might expect, this was all a recipe for disaster.

One problem became obvious as soon as we tried to start. Not surprisingly, we were in the ‘special room’ where everything is toned down and kids can holler as much as necessary without upsetting the other children in the office. Whether or not the J-Man will ever care I don’t know, but it also affords him some privacy. The problem is that there is only so much space in one of those rooms. The most people we could fit on and around the J-Man was four. But it wasn’t enough, and we all knew it immediately. Holding him in the chair was one thing, but keeping him steady enough to not get jabbed by an instrument was something else entirely. Actually, it was impossible in those circumstances. His safety, and perhaps that of the dentist and hygienist as well, was at high risk.

So I gave them permission to do something I dreaded ever being faced with – putting him in the papoose board. (Link to a papoose board product page – click the Images tab for more pictures.) I felt like a horrible parent, and still do two months later. The look in his eyes all during the appointment was of complete terror. He made prolonged eye contact with me, which he never does, clearly imploring me with his eyes to make it stop. I sang to him. I put my head close to his. I did everything I could think of, though I knew it wouldn’t help. I can still hear him screaming over and over again. It makes my blood run cold to think about it.

I’m not sure I’ve ever felt as awful as a parent as I did then. I knew rationally that we had to get his dental work done, but that fact couldn’t possibly alleviate how horrible I felt subjecting him to all that. If someone had told me in that moment that if I’d allow someone to stab a knife through my hand then my son would feel OK again, I would have taken the knife and done it to myself.

Eventually, it was over and done. He was pouring sweat and smelled of raw fear. I got him in the car, and he fell asleep in his car seat. (or passed out, you pick) He sat in the recliner at home with me for a while, very quiet and withdrawn. Later in the day, he got back to normal. He is very, very resilient. I, however, was submerged in a guilt-ridden mood all day and night and into the next day. Writing this puts me back there again.

It was a horrible experience, but I’ve been trying to do the only thing I can with it at this point – learn from it. Having a couple of months to reflect on it, I think we have a better idea of what we need to do next time. Here are my ideas.

  • We need to talk to the dentist in advance of our next appointment and work out a strategy for a more successful visit. They have always been receptive to this, but it will clearly be more important next time.
  • We need to look into sedation and whether it’s a viable option for him.
  • We need to see whether there are other methods of restraint that don’t involve that papoose board but that don’t present a real danger of someone getting hurt by an instrument.
  • We should at least try social stories with him and well in advance talk about dentists via story books. It’s hard to imagine that anything will convince him that going to any doctor isn’t torture, but we have to try.
  • We need to talk to his teachers and OT to see if we can develop a broader strategy for easing his fears in medical situations. For example, they talk about medical things like doctors’ instruments in class using a toy doctor kit and a doll in pretend play.

Would love to hear your suggestions. I know this is something most all of us struggle with.

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Colon Blow

by Mary on August 17, 2011

[Tim: Mary tells her story about everything that happened over the last few weeks that I first posted about in "When Medical Emergencies Attack Your Spouse".]

Towards the end of June, my tummy started to hurt a little. By the beginning of July, it was a bit more bothersome, and on July 2, I had a really bad night. I assumed this was another diverticulitis flare, and told Tim I was going to go to the ER and probably get some oral antibiotics, and come home. The doctor told me it looked REALLY minor, and that 10 days worth of antibiotics would take care of it.

Except, the pain wasn’t getting better, and in fact got worse. I lived with it until the next Sunday… and then called my parents to say that I was going to the ER, that I would probably be put into the hospital for IV antibiotics, and could they please come and stay with the kids. I packed my little overnight bag with some pajamas and a pair of clothes to come home in, and off Tim and I went. The CT scan confirmed that the really minor place looked a goodly amount worse, but again, I figured there would be IV antibiotics, and I would go home.

I spent the next few days attached to IV antibiotics. My parents brought Dale Jr. to visit on Monday, and he climbed onto the bed and we snuggled. Everyone was very careful to keep him from doing me any damage, but I just hadn’t really started feeling better from the antibiotics yet.

On Tuesday, the surgeon came in and started up about surgery again. I looked at the man and said, “Look, you’re a surgeon. Everything looks like it needs cutting to you. I want a second opinion… by a gastroenterologist.” Enter the gastroenterologist on Tuesday afternoon, who began our conversation with “I haven’t read your chart.” I immediately bristled, and then calmed down when he continued, “Because I don’t want to be swayed by other doctors’ comments; I only looked at your scans.” I looked at him for a minute, and then he sat down in the bedside chair and sort of sighed and said, “You need to have this surgery. This place looks pretty bad, and it’s not going to get better.”

[click to continue…]

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Boy vs. Dentist – The Next Chapter

by Tim on February 1, 2011

Sorry to not post in a long time. We have so many things going on that it’s impossible to know where to start. It’s been very stressful these past three weeks, a few major life changes, the normal chaos, and I’m still training for a marathon in the midst of all that. We’ll go into those gory details another day.

Wanted to mention that a little over a week ago we had the J-Man’s every-six-months dentist visit. Last time we went to the dentist, we wrestled with all the issues around restraints and how to get him through the actual process and keep both injuries and emotional trauma down as much as possible. There was the inevitable reflection on whether to use the papoose board to hold him during the cleaning and exam. We received feedback from several people, and most of that feedback echoed our hope of never having to use anything like that with him and looking at it as a last resort.

One of the benefits of all the running and training I’m doing is that my body is significantly stronger and more resilient. But what I’ve learned is that I don’t have to somehow do restraint by muscular force, for lack of a better term, because as strong as he is that would probably just hurt both of us. Besides it’s not something I think is desirable in any situation short of someone being in danger. Becoming the kind of stronger my body has over the past several months has allowed me to be physically comfortable while holding him in situations like this for longer periods of time. It’s the interesting idea that you become stronger, and as a result, you can use less overall strength to do something. All those stronger core and stability muscles do wonders in situations like this. But before I go all Richard Simmons or something…

So we arrived at the dentist’s office, and they had already put the papoose board on top of the exam chair. This got me really anxious, and I think they noticed. They emphasized that they put it there just because in the event Mary and I decided we absolutely had to use it, it already being there would make it much easier. I didn’t feel like they put any pressure on us to use it, and everyone seemed to have a “let’s do everything we can without it first before we consider it” perspective.

It did have a perhaps unintended benefit. The board is a little wider than the chair and stiffer, so it gave the J-Man more surface area to lay on, me more room to hold him while the hygienist cleaned his teeth, and a stiffer surface that wouldn’t make me have to wrestle the chair too. So Mary held his feet, I had his arms and torso, and the hygienist cradled his head while she worked. Everybody talked calmly and kept encouraging and praising him, and I hummed Kumbaya to him. (I’m not kidding. He likes that a lot now.) The hygienist and the dentist are not fazed by anything, and they have such calming and affirming voices that if you removed the screaming panic from the room, they might induce a pleasant narcolepsy in most people. We almost have this down to a system.

Of course he protested strongly and loudly, but noticeably less so than last time. Perhaps he was more comfortable with the process, the way we were holding him, the stiffer board under him, or some combination of those and other factors we didn’t even think of. You never can tell in situations like this.

We really thought he did so well, and he recovered quickly – albeit grumpily – plus his teeth were great, so we called it a highly successful trip to the dentist. Normally we just aim for no major injuries – minor ones are usually acceptable – and no permanent emotional scarring. So this was positively triumphant by those standards.

We were greatly relieved that we didn’t have to even consider the papoose board. There may come a time when some serious medical situation arises where we have to use some sort of restraint. I dread that possibility more than I have words for. But we’re learning that often a combination of the J-Man’s growth and resiliency, our surprising-to-us levels of parental competence and experience, and the reserves of courage he’s learning to draw on in very tough situations come together at the moment when we really need these things to. And repetition, even if it’s six months apart, does seem to help, too.

Next mission six months from now: Both kids will have to go to the dentist. Ack! Stay tuned…

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Autism Meets the Dentist – To Restrain or Not Restrain

by Tim on August 5, 2010

Monday was our semi-annual trip to the dentist. I doubt I need to go into much detail as if there’s one universal dread we share as parents – and a mortal fear that most of our children experience a thousand-fold worse – it’s the dentist. No offense to the dentists in the world, but with every system in your body on sensory overload most of the time, having a bunch of people crawl around in your mouth with loud and/or pointy instruments under bright Klieg lights isn’t really a recipe for that peaceful, easy feeling.

The truth is, it sucks, and all we pray for is that no one is injured as a result of going and that our son isn’t permanently damaged emotionally. We get through it because we have to. I know many parents avoid it altogether. Seeing our children experience what looks like – and likely is – frantic terror is something we’d do about as willingly as having a few fingers chopped off. I guess we just decided that some kinds of bodily care have to be done, and we have to accept what comes as part of that as best we can, which usually isn’t very well.

Monday’s visit was about typical. Lots of wrestling and J-Man screaming and all the dread and parental guilt that goes along with it. It helps that we fired the dental practice that treated us like second class citizens over a year ago. We love our current dentists. They’re constantly saying affirming things to the J-Man, they are completely calm about everything, and they get it done fast. Worth every penny.

But Monday we had to start coming to terms with an issue we’ve never been able to make peace with – to use restraints or not.

To this point, we’ve never used mechanical restraints on him for anything, medical or otherwise. It’s all been a variety of holds that aim for close body contact (deep pressure and hopefully reassurance) without doing anything that looks like it belongs in a pro wrestling ring. We’ve strained a dozen or so of our parental body parts along the way, but the thought of him bound up in something while strangers worked on him in his already terrified state was too horrible to consider.

However, it now takes three of us using all of our strength and skill to hold him at the dentist. I’d suffer a thousand injuries for him over and over again to make it easier on him. But he’s getting so strong that I’m almost to the point where I can’t hold him without hurting both of us, particularly him.

This leaves us with a possible outcome that we dread – using the papoose board. (Link to a product page – click the Images tab for more pictures) The idea of wrapping him in one of these restraints makes my blood feel cold. Even more mortifying for me are ones I’ve seen at hospitals that have the arms extended outward such that the child looks like a swaddled crucifix. Even though they don’t use those at the dentist, the image stays with me.

I can come up with one possible justification for a papoose board for some autistic children that makes some rational sense. For kids like the J-Man who crave deep pressure in their bodies and are calmed by it, there is a certain logic to using it. It wraps them tight, gives them full body pressure, and simulates to some degree the kinds of deep pressure work he seeks out whether as part of occupational therapy, sensory copying techniques, or whatever. I have read the experiences of a couple of other parents whose children were indeed calmed by the papoose board for this very reason. If the J-Man wasn’t a child who responded to deep pressure many times a day in daily life, I can’t imagine trying a papoose board.

The main question is whether we’re more likely to hurt him with three, four, or more of us trying to hold him vs. using a papoose board. Up until now, I’ve felt like the answer to this question has been simple – just hold him and do the best we can. He’s getting stronger and stronger by the day it seems, though. There will come a point where we can’t hold him. I’m trying to make peace with the idea of trying it once, and if it looks like he’s worse with it than without it, we’ll fall back and think of something else.

I know he’s scared out of his mind. Our hearts break into pieces for him. I’d give anything if there were some way we could talk him through it and reassure him. Feeling powerless is a common emotion for all of us, and this is one of those instances where that feeling is unavoidable.

That day six months from now is going to be full of dread. In the meantime, we’d love to hear your perspective.

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The Second Time Around – Having a Child Not in Therapy

by Tim on March 18, 2010

I realized the other night that the second anniversary of what we’ve called Diagnosis Day is upon us. On that gray, March day two years ago, the doctor said the words “diagnosis of autism”, and we jumped down the rabbit hole into this grand adventure. It’s hard to comprehend how far we’ve come in those two years.

But really it started long before that. The J-Man began feeding therapy at 9 months old. We had an evaluation just before that through our county’s child developmental services agency because he was showing significant sensory aversions not only to food but to all sorts of other things. He seemed ill at ease with many things around him. Something just didn’t feel right to us.

The evaluators referred us to a feeding therapist, and off we went on a road of diverse therapies that’s run the gamut of acronyms and has continued ever since. A little over a year-and-a-half after we started that first feeding therapy, we took the on-ramp onto the autism highway, and here we are.

Dale Jr. is now about 10 1/2 months old. It has been like learning how to parent all over again. He eats everything in the house; there’s almost nothing we give him that he won’t eat. We still catch ourselves being completely amazed by how well he eats. He even self-feeds finger foods. He mimics us, uses a few words and signs a little bit, intentionally asks for some things, and shares his interests with us. He’s proving to be quite a daredevil, he explores everything, and he wants to be the life of the party wherever he goes.

We’ve noted many times how very different they are. It’s a wonderful thing to have two such complex, wonderful, and unique little people in our house!

And he’s about the age we started the J-Man in therapy. This fact isn’t lost on us. We are so programmed at this point to look at every part of our day in terms of the therapeutic that we sort of don’t know what to do when things are just moving along fine with one or both of the boys.

I realized that we’ve been at this a while when I praised the baby for his skillful bilateral coordination and object transference and developing his pincer grasp so rapidly (which is wonderfully useful as he eats Cherrios on his own while we do kitchen chores). I have no idea most times whether he developed any of these or other skills ‘on time’ or not, though from a few years of therapies I know the technical names of many of them.

The term ‘developmentally appropriate’ is usually lost on us. I’m not sure we’d know it if it bit us. Perhaps we’re becoming more at home with the mystery of it all. Our two boys have changed us in very different ways, and we know we have more mysteries still ahead of us than we do behind us.

As they say, “‘Normal’ is just a dryer setting.” We get the privilege of experiencing a completely new parenting adventure, and we have two wise little teachers who will help us learn and value all the diverse and beautiful gifts that make us human. The J-Man does things that boggle our mind. He’s only beginning to manifest many of his incredible gifts, but he has already changed the lives of so many for the good, especially ours. And Dale Jr. is quickly following him down that path.

We have two boys who share perhaps the most important gifts of all. They are loving and kind, they brighten every room they enter, and everyone who meets them loves them immediately. Regardless of where the adventure takes us next, we start from this foundation, from which anything is possible.

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Recognizing Your Own

by Mary on September 4, 2009

Wednesday we were at the doctor’s office for the J-man’s 4-year check up. (He’s doing well, thanks!)

While we were waiting, we watched a drama unfold outside, and it made my heart hurt. A boy, perhaps 11 years old, was fighting with all he could muster to NOT come into the doctor’s office. He broke away from his parents several times and ran, not looking where he was going, just running in a desperate attempt to not have to come into the office. At one point he tripped (the sidewalk turned sharply and he didn’t) and went head-first into holly bushes. Holly bushes. So then he was scratched and bleeding. The parents were doing their level best to get him inside.

Tim and I looked at each other and nodded. Boy with autism. We can pick each other out now.

We learned that the parents had given him a massive dose of Ativan to try to calm him, because he HAD TO come in and get a tetanus shot. He needed that shot. The Ativan didn’t work. (As we were waiting to get flu shots while we were there, we heard a loud cheer for him, because they had gotten him inside, and he had received the shot… so they did finally get him calmed enough.) The nurse didn’t seem surprised that we knew the child had autism – she said it was pretty common for parents of children with autism to be aware of others.

There were parents there in the waiting room judging that boy’s parents. I could feel them and hear whispers (not what they were saying, just the whispering voices). And I knew they had NO IDEA what those parents’ lives were like.

And I could only watch, wondering if we were going to be those parents one day. Right now, the J-man is small enough that we can overpower him (see also: holding him down for shots, and holding him in our arms before and afterward), but there will come a day when that can’t happen.

I don’t have a nice way to tie up this post. There’s no “all’s well that ends well.”

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Our Trip to the Dentist

July 31, 2009

Well, our semi-annual trip to the dentist (aka D-Day) went pretty well. And by ‘pretty well’, I mean we achieved the following goals: His teeth got cleaned. He doesn’t require any additional dental work. The dentist, hygienist, and staff were nice to us and respectful of the J-Man’s needs. We didn’t freak out too many [...]

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Time For Our Semi-Annual D-Day

July 29, 2009

Tomorrow is our scheduled, semi-annual dentist day, which we’ll affectionately call ‘D-Day’. We discussed the saga of his last mouth invasion in a previous post. Feel free to read about how much fun that was. Since the J-Man’s last trip to the dentist, we made an important change. We fired his now former pediatric dental [...]

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